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A Sound Start for Every Baby By: Ann Marie Newroth & Susan Lane Topics • Background for the program and components • How the Intervention Services Plan was developed • Brief introduction to standards and guidelines for Intervention • Program Update The Beginnings of BCEHP • In March 2005, Premier Campbell announced a program to screen young children for hearing, dental and vision problems. • $76 M in funding over 3 years will check every child under age 6 years, giving all BC children the best start. What is BCEHP? • BC Early Hearing Program is a provincial integrated Program, that builds on existing publicly funded services and serves children aged birth to 5 years and their families. • The BCEHP is funded by the Ministry of Health and administered through the Provincial Health Services Authority in collaboration with BC Regional Health Authorities, Ministry of Children and Family Development. BCEHP Services and Components • Screening by 1 month of age either in hospital or community (target disorder) • Audiological Assessment by age 3 months • Medical Assessment within 3 months of confirmation of hearing loss • Communication and Family Supports by age 6 months • Public Education and Communications • Program Evaluation (British Columbia Early Screening Surveillance Tool) • Training Why Screen Hearing in Newborns? • Each year in BC, about 120 babies are born deaf or hard of hearing • First 6 months very important for acquisition of language • Studies show that identifying early and enrolling in intervention by age 6 months of age contributes to age-appropriate language • Early Identified children can develop communication skills commensurate with their chronological age, in the absence of a cognitive delay Why Screen Hearing in Newborns? • Average age of identification without screening is between 12-25 months (conservative) for children with severe to profound hearing loss • Age of identification increases for milder degrees of hearing loss • Universal Newborn Hearing Screening reduces age of identification to less than 3 months of age for all degrees of hearing loss Why Intervene Early? • The early years are a critical period for speech and language acquisition. • Children with hearing loss are at significant risk for delayed development of language and critical thinking skills, poor literacy and academic performance and dropping out of school. • Children with hearing loss, as a group, have higher rates of disturbance in social emotional development. (Calderon, et al. 1998) Why Intervene Early? • Poor language skills increases the high risk for isolation, unemployment or underemployment, mental health issues • Late diagnosis leads to a “catch-up” model of intervention--valuable language learning time has been lost (hearing children continue to speed ahead) Children Identified • Younger and milder and/or unilateral hearing loss • Over time, of 100 babies identified (UK) – 50% unilateral or mild – 20% will be moderate to moderately-severe – 7% will be severe – 7% will be profound • Most of the children will be hard of hearing, a small number will be deaf Screening – by One Month of Age Photo By One Month of Age • Screening is either in the community or in the birthing hospital (about 42,000 babies) – Baby sleeps through the screening and computerized equipment measures the baby’s hearing response – All babies receive a 1st screening; if no clear response, a 2nd screening is done – Two different ways of screening: Otoacoustic Emission and Auditory Brainstem Response Screening Photo Audiology Assessment – by Three Months of Age Photo By Three Months of Age • Further assessment if needed – Most babies have clear hearing responses on the screening; about 3% (1260 babies) do not – Assessments are offered at 13 public health hearing clinics where there is the specialized equipment and audiologists have had special training – Some babies will be found to have hearing loss that can be helped (126 babies) – Those babies will be referred for medical management and intervention services Medical Assessment • Provide medical authorization for fitting of hearing aids • Ear, Nose and Throat doctors expedite process • Diagnose cause of Sensorineural Hearing Loss • Evaluate complications & other disorders • Predict: progression of hearing loss if possible • Prevent/Manage deterioration of hearing loss • Provide information to family members Intervention – by Six Months of Age Photo Research • In the 1990’s Yoshinaga-Itano did extensive research in Colorado that compared the outcomes for children whose hearing loss was identified early with children who were late identified. • This research has been replicated in large degree by other investigators • In general the research shows: Research • Intervention before age 6 months results in better – vocabulary – language abilities – speech intelligibility – Speech sound inventory – syntax – social emotional skills – parental bonding – parental grief resolution • Language advantage found for all test ages, communication modes, degrees of hearing loss and socioeconomic status. Creating the Foundation • Oversight by a Provincial Steering Committee • A Series of Technical Advisory Groups – Screening – Evaluation and Research – Intervention – Hearing Equipment – Diagnostic Audiology and Medical • To develop Intervention Services Plan – Visited programs in other jurisdictions – Stakeholder meetings Review of Programs in Other Jurisdictions • Canadian Program: Ontario IHP • U.K Programs: Nottingham Cochlear Implant and the Early Support Program • South Africa Program: Training of Professionals • US Programs: Washington D.C., St. Louis (C.I.D. Moog and St. Joseph’s); Colorado; Rhode Island, Massachusetts (Clark Schools), Utah (SKI-HI) and Alaska State Stakeholder Meetings We held stakeholder meetings throughout the province. Participants included parents, deaf and hard of hearing individuals, Speech-Language Pathologists, Audiologists, Teachers of the Deaf and Hard of Hearing, Infant Development Consultants, Aboriginal Infant Development Consultants, Aboriginal Head Start Teachers and Public Health Nurses. During these meetings we discussed the unique strengths and challenges of each region in British Columbia. We want to ensure that the model we developed would work both in metropolitan areas such as Vancouver as well as in some of the small, remote fly-in communities in the north. North: Prince Rupert, Masset, Terrace, Smithers, Dawson Creek, Ft. St. John, Ft. Nelson Interior: Cranbrook, Nelson, Kelowna, Vernon, Penticton, Kamloops, Williams Lake Vancouver Island: Victoria, Nanaimo, Campbell River Vancouver-Coastal: Vancouver; Coastal regions Fraser: Surrey, Abbottsford Standards and Guidelines • Informed Choice • Family Centered • Evidence Based Decision Making • Standardized Assessment Protocol • Standardized Individualized Family Service Planning Process • Standardized 15-21 month check-in Family Centred Care • Family is the driving force behind all intervention choices and practices • Partnership - Family & Service Provider • Family choice & decision making are central • Services provided in a flexible manner • Strengths of families used as a resource • Family diversity is respected • Help giving styles are empowering Evidence Based Decision Making • Centuries old struggles - educating deaf children • Decisions about intervention planning - based on evidence rather than on “beliefs” or “philosophy” • “Evidence” includes information from current research, assessment, as well as family observations & values • Interventionists assess child’s progress at regular intervals and develops IFSP based on assessment results, family priorities, etc By Six Months of Age • For babies found to have a hearing loss – Offered communication services and supports by no later than age of 6 months (Family Path) – Hearing Equipment Plan: First set of hearing aids is provided at no charge to families (for 3 years) – Ongoing audiology and medical services Family Path • Once a Hearing loss is confirmed (or strongly suspected if appropriate) – Referral to Provincial Coordinator by Audiologist through the BEST data system – BEST Data System also flags children who are in diagnostic services or have confirmed hearing loss Provincial Intervention Coordinator Role • Gathers information (from audiologist, records) • Contacts the family, responds to family’s questions, provides initial information & follows up as needed • Sends information package • Refers to Guide By Your Side • Assists family to connect with intervention team, follows up to ensure this is happening • Ensures team has resources & information needed Intervention Team • Includes parents, audiologist, interventionist specializing in hearing loss, and if indicated: – Community based staff including Speech Language Pathologist, Infant Development Program, and/or Aboriginal – Infant Development Program – Sign language instructor, Vision consultant, Occupational Therapist, Physiotherapist, Physician • Team Service Coordinator (a team member) Supports for Families • Guide By Your Side (GBYS) Program (BC) – Parents of newly diagnosed babies have access to other “veteran” parent guides through a parent coordinator – Guides are trained in supporting parents with young babies and in providing unbiased information Supports for Families • Provincial Well-Being Program will provide free counseling from professional counselors for families who need more than parent to parent support – Use of “red flag” indicators to alert service providers and parent guides when professional counseling is needed (e.g. post partum depression) Between Six to Nine Months of Age • An Individualized Family Service Plan (IFSP) is developed • BCEHP Core Assessments are completed to assess language and overall development • There are list of core assessments and some additional tools are being reviewed Criteria for Assessment Tools • Involves parent in administration; parent is involved at start of the intervention process to effectively guide own child’s development • Standardized on hearing population to ensure appropriately high expectations • Asks lots of questions to provide incremental measurement that is sensitive to changes over short periods of time • The results are useful for monitoring progress, setting goals, and choosing appropriate therapy techniques Core Assessment Protocol • Kent Inventory of Developmental Skills • Child Development Inventory (CDI) • Macarthur-Bates Communicative Development Inventories Next Steps – Assessments • Select Functional Auditory Tool (considering FAPI) • Develop assessment protocol for ESL children- identify any changes needed • Identify needed changes for children with various additional special needs • Identify changes needed for Aboriginal children Nine Months and Beyond… • Assessment protocol administered every six months to monitor progress • IFSP is reviewed every six months or sooner & changes are made to goals & methods as needed • Ongoing intervention • Regular checking of progress (1 for 1 rule) Required 21 month Check-In • If baby is not making expected progress, the team reviews and considers possible next steps: – Referral to tertiary services (for example: Sunny Hill Hearing Loss Team; WellBeing Program – Change or adjustment of hearing equipment or use of equipment – Change to communication approach – Change frequency of intervention – Other changes to intervention/therapy approach? * Note: Intervention teams are encouraged to consider these questions at any point in time….but it is required by BCEHP standard at 21 months Data Management • Development of Web-Based Information System: British Columbia Early Surveillance Tool (BEST) • Tracks babies from Birth (reconciliation against Vital Statistics) through all components • Health Authority and Interventionists enter data on each service provided which will be used to evaluate program impacts and improvements Program Update • Implemented highest-risk infants by February 2007; Started well baby screening in October 2007; • Started “new intervention” process in October 2007 • Integrated and paperless Data tracking (well close) – October 2007 • 95% coverage of births by September 2008 Program Statistics “Snapshot” (Presented at Workshop) Summary • Families are experiencing positive differences in service and equipment access • Service providers have experienced increased training and collaboration opportunities • Province wide standards and guidelines are in place to ensure equity and best outcomes for children and families • There is a strong partnership and collaboration • Getting to the Early in Early Hearing Program For More information • Visit the BCEHP website: www.phsa.ca/earlyhearing • Susan Lane, Intervention Provincial Coordinator [email protected] • Ann Marie Newroth, Program Director [email protected]